Rare Disease Day: February 29, 2020

We are pleased to announce $3,803.44 was raised by the ACDA and an additional £1,144.85 was raised by our sister UK registered charity, The David Ashwell Foundation, for a grand total of $5,138 in connection with Rare Disease Day on February 29, 2020. In addition to this amount, the family and friends of Caleb Carrigan also contributed an outstanding additional $9,229. Our sincerest thanks to the families, friends, colleagues and classmates of the ACDA, The David Ashwell Foundation and Caleb Carrigan for raising such an incredible amount for ACDMPV research!

In the U.S., we would like to give our very special thanks to East Quogue Elementary School (East Quogue, NY), The Suffolk County District Attorney, Financial Investigations & Money Laundering Bureau (Hauppauge, NY), Suffolk County Department of Law (Hauppauge, NY), Suffolk County Budget Office & Management Office (Hauppauge, NY), Suffolk County Department of Audit & Control (Hauppauge, NY), Suffolk County Office of the Aging (Hauppauge, NY) and Suffolk County Civil Service Department (Hauppauge, NY).

In the UK, we would like to give our very special thanks to Handcross Park School, Westons pharmacy, New Beginnings Nursery and Coomb Road School, Mary Magdalene Catholic School, Kirkby Great Broughton Church of England School & Nursery School, Appleton Whiske School, Manor House Surgery and Steel and Alloy Birmingham.

We would like to thank all of our individual donors and everyone who wore #JeansForGenes or sent pictures wearing the ACDA logo! Thank you for your outstanding support of our ACDA families.

Please see below for ways that our ACDA families and friends supported Rare Disease Day in 2020!

Check out our ACDA families and friends wearing #JeansforGenes and the ACDA logo (be sure to visit the ACDA store if you would like to purchase any gear)!

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Below are flyers used by our ACDA families at their workplace that encouraged employees to donate $5 / £5 / €5 to the ACDA to wear jeans to work for Rare Disease Day 2020. #JeansForGenes

Please share your successful Rare Disease campaigns and activities with the ACDA by sending your stories or pictures to president@acdassociation.org. We look forward to hearing from you!

Update (February 29, 2020, 8:30 p.m. EST): As #RareDiseaseDay 2020 draws to a close, we would like to give our sincerest thanks to our ACDA community for the overwhelming support, including generous donations during the past two days in honor of Caleb, James, Fallon, Alex, David, Callie, Jackson, Dean, Garrett, Chelsea, Luca, Xavier, Griffin, Barrett, Ezekiel, Felina, Amelia, Phoebe, Ronan, Johnny, Annabelle, Imogen, Ayla, Joey, Sadie and Finley. These honorary donations represent twenty-six of our precious ACDA children. It has truly been a fantastic two days of awareness and giving.

Stay tuned for updates in the coming days on the total amount raised in connection with #RareDiseaseDay 2020! The funds will be contributed to ACDMPV research grants and supports the efforts of the medical community to find the cause of and cure for ACDMPV. If you would still like to contribute, please visit our website here at any time – https://acdassociation.org/donate/

Searching for answers…hoping for a cure.

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Update (February 29, 2020, 8:00 a.m. EST): Today is (officially!) Rare Disease Day! It is recognized on the last day of February each year, the 29th in 2020! We kicked off our celebrations yesterday with a jeans’ day at workplaces and schools around the world. Please post your pictures today in the comments below of your jeans’ day, ACDA T-shirts, sweatshirts or other apparel featuring the ACDA logo! We will compile for our slideshow on our website. #RareDiseaseDay is one of our most important ACDA fundraisers for our annual research grants. We will showcase all donations made yesterday and today in tribute of a loved one with a special “Rare Disease Day 2020” recognition image featuring the child’s name. When you give in honor or in memory of someone special, you also support our mission of finding the cause of and cure for ACD. Please go here to make your donation today: https://acdassociation.org/donate

Update (February 28, 2020, 6:00 a.m. EST): It’s here! Today and tomorrow we are coming together to recognize #RareDiseaseDay2020! In addition to spreading awareness about ACDMPV, today also marks a critical ACDA fundraiser for our annual research grants and your support matters! Last year we raised over $5,000 on this one day alone.

Today and tomorrow are also great days to wear your ACDA T-shirts, sweatshirts or other apparel featuring the ACDA logo. Please post a picture in the comments below! We will compile all the pictures into a slideshow for our website.

We will be showcasing donations made today and tomorrow in tribute of a loved one with a special “Rare Disease Day 2020” recognition image featuring the child’s name. The ACDA will also send a letter to the honoree’s family acknowledging your gift. When you give in honor or in memory of someone special, you also support our mission of finding the cause of and cure for ACD. Please go here to make your donation today: https://acdassociation.org/donate

If you donate through the Facebook button, please be sure to let us know in the comments below or through an email to treasurer@acdassociation.org as we do not receive a list of individual donors through Facebook. We want to be sure to recognize your honorary donation!

Numerous organizations and schools around the world are participating in our #JeansForGenes campaign to wear jeans to work or school with a donation. Other ways to participate include visiting our ACDA store linked below to buy ACDA apparel or simply inviting your friends and family to “Like” our Facebook page.

The ACDA is a 501(c)(3) non-profit, tax-exempt organization as designated by the Internal Revenue Code of the United States. If you would like to help fund research into ACD, please donate here: https://acdassociation.org/donate/

If you live in the UK or elsewhere in Europe, you can also make a donation directly to our sister organization, The David Ashwell Foundation HERE.

Update (February 27, 2020): Our heartfelt thanks to the NYPD for coordinating and hosting a meaningful Rare Disease Day Awareness Event today at NYPD Headquarters in New York City in recognition of #RareDiseaseDay this Saturday. ACDA members, Maria Catalano and Jimmy Perrella, were special guest speakers and shared a beautiful video and speech about their son, James. The ACDA was further represented by speaker, John Rista, and audience member, Bob Rilling. The event also featured representatives from NORD, medical professionals from area hospitals, organ transplant specialists, law enforcement and other families touched by RDD. Our special thanks to the NYC Police Department for organizing this important event and the Catalano/Perrella family for inviting the ACDA. Alone we are rare, together we are strong. #RDD2020 #JeansforGenes

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Update (February 27, 2020): It’s coming!! Saturday (Feb. 29) is Rare Disease Day and one of the most important ACDA fundraisers for our annual research grants. We will be recognizing the day on Friday (Feb. 28) as well. Wear your jeans to work on Feb. 28 or 29 and/or your ACDA T-shirts, sweatshirts or other apparel featuring the ACDA logo. Please send us a picture for the slideshow on our website beginning tomorrow!

Update (February 22, 2020): Only one week until Rare Disease Day! Please visit our website to learn about different ways you can participate in Rare Disease Day for the ACDA, including flyers to print for our $5 “Wear Jeans to Work” day on February 28 or 29 and links to #ShowYourRare profile frames! It’s not too late for the ACDA to create a special “Wear Jeans to Work” day flyer personalized with your child’s name if you would like to organize the event at your workplace. Please send a message, leave a comment or email (president@acdassociation.org) if you would like to request a customized flyer for distribution. Rare Disease Day is one of the ACDA’s biggest fundraisers during the year and we need your help to continue funding annual ACD research grants! THANK YOU!

Original Post (February 1, 2020):

Rare Disease Day is an international advocacy day to bring widespread recognition of rare diseases as a global health challenge. The day is celebrated on the last day of February every year – February 29 in 2020. The ACDA has signed on once again to partner with NORD to support this awareness campaign and we encourage everyone to participate in some way. Clickto see how the ACDA supported Rare Disease Day in 2019 (and 2018, 2017 and 2016)!

Click HERE for ways to participate in the U.S. in 2020 and click HERE to visit the EURORDIS website for Rare Disease Day 2020 in Europe.

Below are a few suggested ideas:

Click HERE ($), HERE (£) or HERE (€) to print a flyer for anyone to use at their workplace that encourages employees to donate $5 / £5 / €5 to the ACDA and wear jeans to work on Friday, February 28 for Rare Disease Day. #JeansForGenes

Join a social media “rare disease day” campaign by changing your profile and cover pictures to share the importance of rare disease awareness! Click HERE to upload a photo and show how much you care about rare! Use the hashtags #RareDiseaseDay, #ShowYourRare,#WRDD2020, #ACD, #ACDMPV

Organize a fundraiser to raise money for the next ACDMPV research grant.

Contact your local newspaper to write an article about what Rare Disease Day means to you. Click HERE to read various articles previously written about our ACDA families.